Veg diet-based improvements in eGFR may not... - Kidney Disease

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Veg diet-based improvements in eGFR may not mean much of significance.

Skeptix profile image
119 Replies

It's possibly not news to many (I've heard folk say not to get hung up on eGFR). But I've just read that creatinine-based eGFR techniques should not be applied to vegetarians or people on a low meat diet. (I understand creatinine-based measurements to be the typical way eGFR is calculated.)

Why is this? Well, meat (cooked) contains creatinine so when you eat meat your serum creatinine naturally increases. Serum creatinine is the serum marker whose value is usually used in eGFR calculations. And so your diet influences this eGFR measurement

Eat less (or no meat) and your serum creatinine will probably fall. Consequently, your eGFR would improve.

But that says nothing about your actual GFR (actual rate at which blood is being filtered). Your actual GFR is the true measure of your kidney performance, not an number which is being influenced by what you happen to be eating around that period of time.

Indeed, you might well find your eGFR is improving (because you've stopped eating meat) but your GFR (which usually isn't being tracked) is disimproving (because CKD is a progressive disease)

How does one get an accurate insight into the movement of their CKD?

Source:

healthunlocked.com/api/redi...

Creatinine based estimated GFR methods should not be used with certain people as the results may be erroneous. Those people include:

"Persons with extremes in muscle mass and diet. This includes, but is not limited to, individuals who are amputees, paraplegics, bodybuilders, or obese; patients who have a muscle-wasting disease or a neuromuscular disorder; and those suffering from malnutrition, eating a vegetarian or low-meat diet, or taking creatine dietary supplements."

Edited in attempt to clarify / edit thread title to be less clickbait-y

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119 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

HI Skeptix I do not understand the point of what you are saying. Are you saying because someone is eating a vegetarian diet or about sixty other reasons, your GFR and creatinine levels do not mean a thing..... that makes no sense. The whole point of eating a plant based IS to have the effect of lowering you creatinine and raising your GFR.

Skeptix profile image
Skeptix in reply to Bassetmommer

I suppose I understood eGFR to be a commentary on kidney performance. But if eGFR is improved merely by 'artificially" reducing the number on which eGFR is built (i.e. eating less meat = creatinine goes down) then an improved eGFR figure is of no kidney performance-related consequence.

You're raising your eGFR. You are not raising your GFR. The latter is a measure of kidney performance, not the former. Maybe that's the reason for the advice not to use eGFR estimations on the veggie/vegan population: it won't give a good estimate of GFR

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Edit: it occurs to me that once you've stabilised on a meat free diet and so, your serum creatinine level stabilises, creatinine/eGFR can be used to track progression/regression of the disease

In other words: once stabilised on a meat free diet, you might find you gotten an eGFR improvement jump from 35 to 50 (because your diet reduces your creatinine numbers).

Your actual GFR could still be 35 however .. there has been no improvement in kidney performance. But the useful thing is how the number moves: up or down or steady. THAT is an indication of direction of disease, not an accurate figure of kidney performance in itself

Stavrosang profile image
Stavrosang in reply to Skeptix

I was actually reading something similar recently

kidney.org/atoz/content/cys...

Stavrosang profile image
Stavrosang in reply to Skeptix

Seems like the results of this test can also be used to calculate an egfr for the ones that don’t fit in the standard box

Skeptix profile image
Skeptix in reply to Stavrosang

Something to tell my doc next time I'm doing bloods!

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

That is kind of like when the neph tells me to "push water" to raise my GFR. So, I do and it raises my GFR. But, that does not mean at all that my kidney function actually improved. BUT, it can make a difference in delaying decline of my remaining kidney function. And, so it is with a vegetarian or vegan diet.

Sophiebun11 profile image
Sophiebun11 in reply to Skeptix

That is very interesting. I feel it's kind of disappointing to me as I've been a vegetarian for over 30 years, so if I'm understanding correctly that means that my eGFR really is what it is. If so I'd hate to think it would be a lot lower had I not already been on a plant based diet for so long. I'm interested to find out more about this.

Skeptix profile image
Skeptix in reply to Sophiebun11

It really is what you GFR says. What your eGFR says is only an estimate. So rising eGFR possibly only means your estimate is getting closer to the actual.

For example, if you are dehydrated, your creatinine ought to be elevated in serum concentration. Which means your eGFR will go down. Even though your GFR hasn't. eGFR is a quick cheap estimate. But not necessarily accurate.

That said: if you (rather your kidneys) are suffering vascular inflammation, they won't be operating efficiently. So if you remove the inflammation, and they perform better, GFR and eGFR will go up. Your kidneys will have gotten somewhat better, won't they - just like an inflammed joint gets better when the inflammation goes away.

I don't understand KD to know what's possible. Scarring is scarring and I don't suppose that can be changed. But if I can optimize.my kidneys and get the eGFR to be an accurate measure then I'm quids in.

It will be interesting to see my next bloods. I've been drinking 1.5 l a day of water after a lifetime of spurning the stuff. My blood could be as concentrated as the Dead Sea :)

Sophiebun11 profile image
Sophiebun11 in reply to Skeptix

I guess I'm concerned I don't have a lot to change since I did everything "right" before CKD was ever on the horizon. I've been a vegetarian since age 10. I drink one 5 gallon bottle of water per week, it helps my asthma to stay very hydrated. Maybe starting the low dose of Prednisone the N. put me on Monday will help inflammation and skew the figures for the better. I appreciate the info I'm learning on this forum. We are all different and have varying outcomes and opinions so this is an interesting place. Thanks.

Skeptix profile image
Skeptix in reply to Sophiebun11

You may well be veggie but are you consuming protein to beat the band?

Like, a Linda McCartney veggie 1/4 pounder has as much protein as a McDonald's 1/4 pounder. So it may well be that there is more you can do than you think.

You happen to read Lee Hull's book Stopping Kidney Disease?

What's out in your bloods?

Sophiebun11 profile image
Sophiebun11 in reply to Skeptix

I eat a lot of protein foods plus I add protein powder to my quinoa. The Renal dietician said I should have at least 40 - 50 gr of protein daily. She inquired about what I ate for breakfast lunch and dinner and figured it all out and said I am in a good range.

My blood work shows my total serum protein, albumin, and ferritin levels are all within normal limits.

I ordered the Lee Hull book online this week when I saw you and others mentioning it. I hope it will arrive soon (like tomorrow), I am very anxious to start reading it.

I don't do much exercise. I know that's something I can work on. At least since the Neph. started me on Prednisone this past Mon. I have a little less pain and little more energy.

Thanks for the reply.

Skeptix profile image
Skeptix in reply to Sophiebun11

The book will explain protein and so much more. Get the Kindle edition or read the Look Inside on Amazon.com if you want to pass the time until the book comes!.

You've said what's good in your blood but the question was whether anything was out. You're eGFR 29 which means creatinine is way out - let's say 210 or thereabouts ??

Anything else? What about BUN (urea)

Sophiebun11 profile image
Sophiebun11 in reply to Skeptix

I don't have Kindle. I'll wait on the book, that's a good thought though.

I'm getting new labs in 2 weeks. For now I have a lot of things wrong in my lab work that aren't even kidney related so I'd rather not post numbers. I'm only saying my numbers relating to my diet and protein are within normal limits. I'm not implying anything else is normal when obviously it isn't.

I don't have any dietary problems. I have tons of other health issues, kidneys being only one of them and not even the most serious at this point. I have many abnormal lab tests that are both kidney and non-kidney related, but not related to my protein intake.

Thanks.

Skeptix profile image
Skeptix in reply to Sophiebun11

Okay. Sorry to hear that you've such issues. My toes curl sometimes at the raft of things many folk are facing into - not least when something like a kidney friendly diet is the opposite to what's required for another serious ailment the person has.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

I also did not entirely understand the post , except that eGFR is an estimate of how well your kidneys are functioning at a given time.

You seem to have lost sight of the purpose of this community is to offer advice and support for those with CKD. Your questioning of almost everything here is not being helpful. Perhaps you should direct your questions to your own physicians.

Skeptix profile image
Skeptix in reply to

From the About page

"In this community you will find a safe and supportive space where you can share your experiences, ask questions, and get answers that are accurate and up to date"

There is a further piece in the About section regarding following the science...

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You can read what I write as questioning (i.e. ask questions). I question the use of eGFR for the commonly understood purpose: how well your kidneys are functioning. That understanding appears to be erroneous in the case someone goes on a low meat or veg diet.

Or you could read that same thing as advice. I have tripped across something that I didn't appreciate and that others might not appreciate. Stavrosang gets on to say that he's come across that same thing and that there is another way to eGFR without using creatinine as the measure. That's useful advice if someone wants a decent estimate and creatinine isn't the one to base it on.

You disagree?

What's the score here? Is it questions or advice according to YOUR view that receive a welcome and the rest is out of bounds?

You have already expressed your disdain for Lee Hull. Yet you won't be able to provide a single source where someone new to CKD can delve into this multifaceted subject with anything like the ease that comes from reading a single book.

Who is going to provide the "accurate and up to date info" if not us wot do the digging. Do you think folk who go on a low meat diet and who celebrate improved eGFR based on creatinine readings ought to be given a heads up on the potential realities of that estimate? I think they should.

in reply to Skeptix

Your commentary comes across as challenging, and not in a good way. We do answer questions. Your posts challenge the information. That's why I suggested you direct the questions go your physicians.

Stavrosang profile image
Stavrosang in reply to

You should exercise a bit more tolerance in this community and stop shooting people down for raising genuine points for discussion

Skeptix profile image
Skeptix in reply to

"We"? Who is "we" if not "us" of which I am one?

Or are you supposing there is some Kidney Oracle here (the NKF) and that "we" is in fact those who follow and advocate that parties line?

Whilst appreciative and by no means dismissive of the NKF the fact is that they are not necessarily the cutting edge on this subject (like, in 2019, they hadn't updated guidelines for 20 years) and are not necessarily answering the questions needing answering in most accessible fashion

We need to advocate for ourselves. In so far as doctors, dieticians and sites like this serve our needs then fine. Where it is figured they do not the patient pushes ahead.

I'm really not sure how a self advocate is meant to blindly bow to anothers view.

Finally, I don't think this particular thread challenges the information, the NKF seems to agree that creatinine based eGFR has limitations for particular populations (such as veggies/vegans/low meat diet.

Bet117 profile image
Bet117NKF Ambassador in reply to Skeptix

Skeptix,

I appreciate your contribution but it appears to be confusing to members of the community and is not appropriate for everyone.

Please consider others and the purpose when posting.

What you feel may work for you, but may not be medically sound for others.

You are in Ireland as is a dear friend of mine. The availability and medical system is diverse from that of the US and other countries.

We are here to support and work together and there is no need for abrasive retorts to your posts.

Without the intent for controversy, I am re- posting community guidelines as a reminder to appropriateness and purpose.

Below is a list of our Administrators/ Moderation Team.

Perhaps you may want to discuss your views with one of them in a Private Message/Chat. On the Kidney Disease, their information can always be found at the bottom of the page. They are very receptive to discussion.

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Skeptix profile image
Skeptix in reply to Bet117

Hi Bet,

Thanks for that. Best that I do take you up on your suggestion to discuss this further with administrators.

Skeptix

oceansplash profile image
oceansplash in reply to Skeptix

I understand what you are asking. I say this because my biopsy says severe moderate ckd stage 3a. My last grf was 53, creatine was 1.16. I don't each much. But with the biopsy saying ckd 3 severe moderate stage I read that as I'm more in the stage 3 moderate ckd stage but it is severe. You would think severe would make me a 3b - or at least I do. Not that I want that, but anyway if anything I think we can over think things too much (or at least I have), and that I stay happy it being in the 50's. Unfortunately, my doctor isn't any help at all. Quite frankly I don't know why I'm paying her. One kidney, protein down from 1800 to 538 w/ losartan. No need to fight among us all please!

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

I remember when I first started reading your posts, you too were not so gung ho about Lee Hull. So, please allow others to 'be where they are', and not be so challenging. Just like you have challenged me when I said I had a bad reaction to Albutrix, and I later stated it was chemicals wrapped in chemicals. And, by the way, since I again tried it, I again have had a 'bad reaction', and I do believe I am having an allergic reaction to the chemicals.

Skeptix profile image
Skeptix in reply to LuvSmallDogs

I hope I've been balanced in promoting Lee Hull (and I have promoted him). He was banging the very low + keto drum (and a lot more besides) before anyone (including the NKF did). He absolutely deserves a hearing, in my book. Whilst flawed, I've not seen a better one-stop-shop for a newbie to get themselves abreast of the CKD issue.

I would make certain 'arguments and enquirys'. I've come to find argument and enquiry serving me well (versus listening to doctors as if they are abreast or have my interests uppermost). One of those enquirys regards your assertion that Albutrix is full of chemicals. That it doesn't appear to agree with your body isn't a support for it being full of chemicals.

As far as I can see there is nothing particularly controversial in Albutrix so it is skewing things somewha5 for you to say its full of chemicals.

My suggesting workarounds is neither 'challenging' nor 'promoting'. At least that is not the intent.

You figured Albutrix would be beneficial, were having trouble with them. I suggested change of brand or consume them differently. It's mere attempt at problem solving, I would have thought.

I'm sorry if you see me as pressing anything, since that was not the intent. And absolutely, there are any numbers of drums that can be banged.

P.S. The way I seek to arrive at 'truth' is through challenge. If something (e.g. a claim or a position) successfully meets the challenge then it is more likely to be true or nearer truth. On the contrary, if it cannot overcome the challenge then it is less likely to be truth. That's where I was coming from on Albutrix being 'full if chemicals'. I don't know whether they are or not - the question hadn't crossed my mind. But I initially suppose not so, in the face of your claim: 'full of chemicals'. And so challenge to help establish truth of claim. Its not a personal thing or even something with an agenda. If Albutrix full of chemicals then best that be known by all, afterall.

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

You have avoided the issue that you, yourself were not for Albutrix to begin with. As for challenging people, why don't you challenge yourself. You have gotton a bit too inappropriately personal in comments.

I cannot find any information on how such keto analogues are made. I just know for a fact that I did take them for 17 days, and got progressively sicker. I did not know why I was getting sicker, but put it together as the taste of the pills ended up permeating every cell in my body, and the taste in my mouth was so horrible that if I had to take them to stay alive, I could not stand to go on. I finally reached the point after 17 days of taking Albutrix where I 'knew' I was dying. I was in truly bad shape. Within 36 hours of stopping the pills the stuff had worked out of my system, and I was feeling good again. So, being I was having a difficult time getting adequate protein without getting excessive in carbs and calories, I decided to try Albutrix again. On the first day I took 2 pills with lunch. On the second day I took 2 pills with breakfast, and had a severe reaction that almost stopped my heart. It took a good 24 hours for me to feel reasonably well again. I will NOT be trying them again. I still consider Albutrix to be chemically made. If you do not like my belief, then show me the proof instead of just getting on my case about what I have said.

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

You would think in this day and age of internet, that information would be easily able to be found as to whether keto analogues are natural or synthetic. But, everything I have found indicates it would be synthetic. It starts as natural compounds but goes through so many steps of processing that it does absolutely appear to be synthetic: e.g. chemical.

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

He has total control over reviews of his product... NO negative reviews?... or NO negative reviews allowed? Only truly positive reviews allowed to stand. I know if I were to give a review I would speak of how I almost died from allergic reaction to it.

Skeptix profile image
Skeptix in reply to LuvSmallDogs

Try Trustpilot? You can review things there. If someone is searching for something, Trustpilot is usually close by in the listing.

The 'reviews' on the Albutrix site are puff pieces aimed at fleshing out the advertising rather than an actual attempt at creating a review section.

It's a common enough ploy and one that ought be seen for what it is. I can't think of company sites that actually allow folk to review products. That would mean allowing folk (including the competition) to say what they like about your product, right in the midst of your advertising?

Almost died?

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

Yes, almost died! I have long-term heart failure as well as kidney disease. My heart has stopped a number of times, usually when I have not had enough salt. Or with allergic reactions. And, Albutrix gave me among the worst reactions. But, you would know the severity of my heart condition, cause you have commented after me in posts.

Skeptix profile image
Skeptix in reply to LuvSmallDogs

Bloody Heck! Sorry for your troubles, as we say here.

Could I suggest that your bad reaction to Albutrix is more to do with your complex health condition and less to do with the formulation of Albutrix? It's not so much that it's "full of chemicals" (which implies its a near toxic substance we should all steer clear of). Rather, you are particularly sensitive to substances whether natural (salt, the lack thereof) or not so natural.

Have you (or would you consider) trying out the alternatives? The only one I know of available in the US is ketorena.

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

IF we could leave reviews on Albutrix, I would have to leave the review on (my) experience with the product – not someone else’s experience with it. That is how reviews work.

In response to your other comments... Albutrix has gone through so many steps in processing that it is no longer a natural product, but a synthetic. It is your words stating that means toxic – not mine, as is (your words – not mine) that it is something we should all steer clear of. I think you are ‘beating a dead horse’ with this subject. Let it go.

Stavrosang profile image
Stavrosang in reply to

I completely disagree with this response. Being able to openly discuss our condition and get different advice / opinions should never be discouraged. It’s the whole reason for this community to bring patients together to educate and discuss these types of issues. If no one questions anything then nothing changes

If you don’t like a post you don’t have to pay any attention to it.

OKShakespeare profile image
OKShakespeare in reply to

Skeptix analysis is on the mark. Don't put your head in the sand just because the truth is unpleasant.

nellie237 profile image
nellie237

I can see where you are coming from. I asked myself the same question.

I think the short answer unfortunately (and which you've answered yourself) is that after reducing protein you can only assess movement over time, which is a b1*ch because you don't feel that you have time to wait. I can empathise.

Kidney2014 profile image
Kidney2014

Like nellie237 stated, I see where you are coming from. Some people may not understand your post because of semantics.

In other words, I guess it’s not so much about improvement; it’s about hoping that eating less meat or that eating a plant-based diet might slow the progression of disease. Because as far as conventional western medicine has told us, once you have CKD, it can’t get better; it can only be maintained or get worse.

And maybe if someone modifies their diet, they can use the new labs as a starting point and then track the trend from there.

But as you suggested, it’s not technically improvement of GFR.

Bet117 profile image
Bet117NKF Ambassador in reply to Kidney2014

Agreed

Skeptix profile image
Skeptix in reply to Kidney2014

That's about it. And as I said, it may be that creatinine based eGFR has use in a steady state situation ( like: I'm on a vegan diet, protein x gr/kg and have stabilised that.

You see, I'd like to know about improvement because it makes sense that we can improve (if only so far). If my vascular system is currently inflammed then it strikes me as reasonable that the vascular system won't be operating efficiently. And so, if I reduce inflammation, I'll improve on how well my vascular system works. Including the kidney vascular system.

It's not reversing the disease. But it is optimising and preserving wot u got.

And in order to monitor that you want the best measure you can get. It's really hard to steer a car with a chewing gum steering column!

Kidney2014 profile image
Kidney2014 in reply to Skeptix

For what it’s worth, I appreciate you bringing your perspective not just to this post but to the forum as well. And even more interesting to learn how different systems work across states, countries, regions. It’s good to hear others’ experiences and discuss openly, whether agree or disagree. That’s the point of this forum right? Keep it up.

horsie63 profile image
horsie63 in reply to Skeptix

So I fall into the "other" range in that I am very small at 4'9" and 92 lbs. There is a new calculation for eGFR that takes into account your height and weight along with creatinine and age. The calculation that shows up on my bloodwork has me at 23% but using the height and weight I am at 17%.

userotc profile image
userotc

The link you provided is useful (thanks) and my mum's results correlate with the CKD-EPI method. This appears broadly consistent with the comments in FAQ 1, referenced at the bottom of the page you linked with her eGFR ~60 (actually 59) according to surgery record. The other method gives ~10% lower estimates indicating her CKD is not "advanced".

FAQ2 also explains why creatinine is less appropriate in terms of muscle mass changes which affect her as she is aged 65. So all seems sensible with adoption of eGFR instead.

But re your post, do you have any evidence/examples where "you might find your eGFR is improving but your GFR is disimproving"?. If not, eGFR appears to me to be a useful indicator of CKD or at least its trend. Mum's eGFR has been steadily improving so good progress at least in terms of serum results, albeit less so for urine data.

Skeptix profile image
Skeptix in reply to userotc

The observation related to eGFR improvements arising from dietary changes (i.e. less creatinine in, due to ones shifting to a veggie/vegan/low meat diet = improved eGFR).

Such a eGFR improvement isn't a GFR improvement but appears to be considered by many as such. "Went vegan and my eGFR went from 32 to 55. Waaheyy!!". That kind of thing.

The comment that actual GFR could be going down in the face of rising eGFR was tied to this same thing. CKD is invariably progressive (we are told). And so one could expect actual GFR to be disimproving (since it always is, we are told) even in the face diet related eGFR improvement.

That make sense?

userotc profile image
userotc in reply to Skeptix

Not completely but opinions differ. Firstly I believe kidney disease can be maintained, if not improved, with diet and well-being. Note I believe that with many other medical conditions too.

Re eGFR measurement, I assume you don't have the evidence I asked for and Marvin's reply to you suggests it probably doesn't exist. With GFR seemingly not measured, it appears that we have little choice but to accept eGFR in terms of serum data to monitor CKD.

Furthermore, both my mum's nephro and her urologist report that they are delighted with her progress...in terms of her continually improving serum results. Whilst we do have reservations re their acceptance of her worsening urinary protein, we must accept (reluctantly as far as nephro is concerned!) that report. And presumably they can compare with patients having worse serum results that lead to more advanced CKD and it's associated symptoms & outcomes.

Skeptix profile image
Skeptix in reply to userotc

Hopefully it's clear that this thread relates to a particular audience: those who've undergone significant dietary alteration (I.e. a lot less meat or no meat at all). They would presumably see an eGFR boost simply because they are 'massaging the creatinine figures"

The current paradigm (probably based on solid observational evidence) is that GFR is in constant decline for people with CKD. There is no need to evidence that. The dog in the CKD seems to accept that.

So we presume we are in constant GFR decline unless otherwise indicated.

Whether CKD can be arrested (remission)? Well Lee Hull says so in his case, but as far as I know, the science only says "slow down" with diet. Now they are looking at large sample groups in their surveys, so it can be that individuals in those same groups experienced remission and that was lost in the averaging out.

Slow down (assuming slow down enough) is good. We can die of something else instead!

You've hit the nail on the head though. It's improving results that matter. Urea gets in range is good. BP gets in range, its good.

An eGFR boost aligned with cutting down/out meat? Meh.

userotc profile image
userotc in reply to Skeptix

I think we've come to an agreement, at least that TRENDS (incl eGFR) are key.

Following relatively quick research on the subject of eGFR measurement, my conclusions & links are below. Enjoy reading some/all and thanks for the discussion:

1. Identifying trends in eGFR is often more informative than one-off readings (as we agree/above) ukkidney.org/health-profess...

2. eGFR lacks precision and accuracy until GFR <60ml/min/1.73m2 (mum's always <60 so far) ncbi.nlm.nih.gov/pmc/articl...

3. There's strengths and limitations of both eGFR and measured GFR nature.com/articles/s41581-...

4. Measured GFR Does Not Outperform eGFR in Predicting CKD-related Complications ncbi.nlm.nih.gov/pmc/articl...

5. There are flaws of eGFR versus True GFR in Patients with Diabetes Mellitus karger.com/Article/Fulltext... (mum doesnt have diabetes)

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

Your term 'massaging the creatinine figures" is a very accurate way of saying it. Just like "pushing water" increases the GFR.

oceansplash profile image
oceansplash in reply to Skeptix

Makes sense but depressing, cause we would love to believe our ckd is getting better......Unfortunately the damage is done.

LuvSmallDogs profile image
LuvSmallDogs in reply to Skeptix

Remember that Lee Hull was in pretty bad shape, and with his diet + Albutrix he is doing well 10 years later. Yes, he does indicate there is some decline, but not for his program he would likely be a goner or on dialysis for many years already.

Marvin8 profile image
Marvin8

You lost me at "disimproving". Just kidding. :D

Skeptic, you've thrown a lot of spaghetti at the wall in your opening post, so let's see what sticks...

Yes, it's true that going on a vegan diet tends to lower creatinine levels and raise eGFR, but as you correctly pointed out, eGFR is not GFR. That's a whole topic in and of itself that I'd prefer not to get into here. Suffice it to say that we ALL wish to know whether going vegan can improve our actual kidney/nephron function. Presently, there isn't much supporting evidence due to a dearth of published research. Why? Probably because there isn't any money to be made from the endeavor. Could veganism worsen kidney function? Probably not, but again, this hasn't been proven either. The only studies I've seen seem to agree that significantly lowering one's protein intake positively correlates with a slower decline in kidney disease progression as measured by creatinine, albuminuria, etc. which to me isn't saying very much. That's why I keep an eye on cystatin-c research. Yes, you also stated that creatinine is the only serum marker used to measure eGFR but I mentioned long ago that cystatin-c is a viable alternative. Lastly, you wrote; "How does one get an accurate insight into the movement of their CKD?", but followed that with a link that references lab standardization of creatinine measurement. Not quite sure how that answers your question.

Btw, I appreciate all your questions and don't take umbrage at your challenging the status quo. It's all good.

Skeptix profile image
Skeptix in reply to Marvin8

Thanks for the thoughtful response.

I was raising the issue based on what I observe as a common understanding / common experience.

It is common to see people (here) celebrate an increase in eGFR. Up to yesterday I would have done so. It is worth drawing attention to the issue / explore the issue.

I may have read about the cystitis c option at some point but not absorbed it.

It's common too, to see people decry their experience of the doctors. People ot told that they've a kidney issue until gfr 40 or experiencing nephrologists as inactive until they hit end stage. It follows that in order to be own 'Best advocate' we need to explore and understand. And in a way, not so much ask our doctors as exceed our doctors.

It would be me who would suggest a cystitis c based eGFR to my doctor rather than them suggesting it to me!

You don't decry such exploration (some appear to) but would understand it will be nessecessarily messy and non linear.

oceansplash profile image
oceansplash in reply to Skeptix

You can order this Cysteine C test online.

LuvSmallDogs profile image
LuvSmallDogs in reply to Marvin8

In 2016 my neph told me to "Push water" in order to raise my GFR. But, when I directly asked her if that would mean my kidney function was improving, her answer was, "No. The damage you have to your kidneys is permanent."

DEZIN profile image
DEZIN

I follow a vegetarian diet which did lower my creatinine number., and raisedMy GFR. All l know is I physically felt better and was able to do more.

I look at it this way, you are giving your Kidney’s a break when you eat less

Food with high creatinine levels. Your are flushing out your system.

No matter what the article said that you read I will stick with trying to help

My kidneys with clean diet and be thankful that it helps me enjoy life.

Skeptix profile image
Skeptix in reply to DEZIN

I'm on a very low protein, plant based diet myself. It appears to delay /slow CKD progression. Can't say I feel better though (other than the physiological benefit of knowing I'm not shovelling carcinogenic bacon into my body 😀)

The point was though, that eGFR improvements arising from going on such a diet (I.e. eating less creatinine) probably doesnt mean your kidneys are performing any better. Celebrate taking a step to slow the disease (by improving diet). Don't celebrate a meaningless number change that follows your having taken that step.

DEZIN profile image
DEZIN in reply to Skeptix

I will celebrate a low creatinine number because as it goes down my Energy goes up. Kidney disease is diverse in its causes, and reactions for

Different people. I wish you the best . I choose to stay positive and live

Each day as best l can.

orangecity41 profile image
orangecity41NKF Ambassador in reply to DEZIN

Agree with you DEZIN. Same here, I see an improvement in my health since been on the CKD diet and am pleased that my kidneys are functioning better. To me this is being kind to my Kidneys. It to me is about quality of life. Please do not answer me Skeptix.

LuvSmallDogs profile image
LuvSmallDogs in reply to DEZIN

I have yet to retest since going plant based, but I feel so much better. My energy has gone up, the swelling in my extremities has gone down.

RoxanneKidney profile image
RoxanneKidney in reply to DEZIN

true that

UhOhCKD profile image
UhOhCKD

Hi Skeptix, I'm not sure I completely understand your post. It appears that you have been doing a lot of reading, research, etc and then wrote a post and forgot that the readers here have not been along for your research journey and aren't able to follow what is going on in your head.

However, I think you're basically saying, "who cares if your eGFR goes down just because you stopped eating protein? Your kidney is still damaged and nothing has improved so big whoopty-doo."

I think you should try looking at it like this: if your eGFR is too low then its an indicator that your kidneys are currently being stressed and you are possibly doing more damage. Keep in mind, a healthy person can eat lots of protein and their eGFR does not get really low so it is somewhat a marker of your kidney health. So if someone wanted to test and see if their kidneys have actually made progress in healing, then they could start eating a lot of protein and see if eGFR remains in the healthy range. I'm not recommending you or anyone try that , I'm just sharing ideas.

LuvSmallDogs profile image
LuvSmallDogs in reply to UhOhCKD

Excellent!

HisLittleOne profile image
HisLittleOne

Following this post out of interest.

Marvin8 profile image
Marvin8

Just to let you know, research has demonstrated that the CKD-EPI (eGFR) equation utilizing the ENDOgenous markers of BOTH creatinine and cycstatin-c is as accurate as the gold standard of direct GFR measurement utilizing EXOgenous filtration markers (e.g. inulin and iohexol). This means that folks should request that their nephrologists include a cystatin-c test when doing labs. THIS is the best way to keep track of how you're doing since direct measurement is pretty impractical.

Skeptix profile image
Skeptix in reply to Marvin8

Why didn't you just say that at the start 😀

Marvin8 profile image
Marvin8 in reply to Skeptix

Because I suffer from terminal verbosity.

Skeptix profile image
Skeptix in reply to Marvin8

Brother!

Darlenia profile image
Darlenia

I appreciate you bringing up this matter. Considering all angles to a situation is a good thing! I truly believe that the kidneys generally degrade based on underlying conditions that diets often can't address and that, in some cases, diets can indeed mask and possibly encourage kidney failure, e.g. those that worsen diabetes for example . In my hubby's situation, his numbers were trending in the right direction when suddenly everything reversed seemingly overnight. It caught everyone by surprise except for our nephrologist who simply stated "Sometimes kidneys just do that. They just quit like that." My hubby was on a strict low sugar and carbs diet, largely vegetarian in nature, to get him off all meds. (Diabetes was the cause for my husband's high blood pressure and kidney failure, so we modified the renal diet.) Yet the diabetes won the race even though reports said otherwise until the bitter end. It was a shocking outcome. Yes, I do feel his diet hid the actual picture from us. But I also feel his diet could have saved his life if he had addressed his diabetes earlier in his life. Thanks again for raising provocative questions! Questions can lead to great outcomes. Per Manoj Arora, “Doubts are good. Confusion is excellent. Questions are awesome. All are attempts to expand the wisdom of mind.”

Skeptix profile image
Skeptix in reply to Darlenia

Ah shit (I would normally say "ah sugar" but given the circumstances)

Yeah, you see that's the kicker. For all the fighting against we might engage in, we really are minnows.

We believe that if we fight we will succeed. But it ain't necessarily so. You see folk on here with contradictory diet requirements given two conditions. Or having to strictly regulated something, so life becomes potassium-watch.

It's tragic really. Really tragic. Such bravery. Such resistance.

So yeah: fight, resist, question. But in my own case there is faith and an acceptance that this world is ultimately a disaster-zone and that death is the aim of it. So don't get your knickers too much in a twist about it.

'Cept I've a 10 year old who needs me and a wife that loves me. Otherwise I'd be tucking into a 16oz steak with pepper sauce as we speak

Best..

Michael__S profile image
Michael__S

I am giving you a cold shoulder and side with Mr Hidden on this. Not for asking a question but for using a clickbait as a title. "Veg diet-based improvements in eGFR may not mean a thing." doesn't mean a thing, it's many things but it's not science. Asking yourself what creatine is in the first place might be a start. davita.com/education/kidney... kidney.org/atoz/content/wha...

Skeptix profile image
Skeptix in reply to Michael__S

You really need to take this up with the NIDDK linked in the OP.

niddk.nih.gov/health-inform...

They say when not to use a (creatinine based) eGFR and going veg diet is one of those times.

Your creatinine link doesn't say anything about dietary creatinine adding to serum creatinine (which is, I gather, why the advice not to use creatinine based eGFR for folk on veggie diets).

Davita says

"Other factors that may affect the level of creatinine in the blood include body size, activity level and medications."

What about eating creatinine (cooked meat)?

You call it click bait. Yet an eGFR improvement following dietary alterations to limit creatinine intake (aka veggie diet) probably means nothing of significance. You've likely merely massaged to the figures making up the calculation.

-

I mean nothing controversial. My first bloods are due, following a few months on a very low protein diet + keto acid analogue supplement.

Prelims are encouraging: urea is waay down (not surprising tbh). Cholesterol is waay down (not surprising tbh).

But were my doc, come full results, to say my eGFR had gone from 30 to 40 I'd be elated! I'd have seen it as some kind of improvement in kidney function, a hauling of myself away from death.

eGFR is considered the BIG CHEESE. Everyone quotes it*. Everyone coming on here mentions it*. We ball watch it.

* well, lots do anyway

But whatever about the positive move I've made generally, all the improved eGFR figure means is that I'm not eating creatinine much. And so, in itself, a meaningless figure.

See what I mean?

Michael__S profile image
Michael__S in reply to Skeptix

I don't see what you mean. My brain has harder time understanding why the link from your reply doesn't match the one from the OP (Original Post??) than anything else. (Edit: And somehow you appear to skip) the original link to a faq about eGFR. The other one got a section titled "limitation" not uselessness.

It seem to point back to eGFR vs. GFR doesn't it? That's what I see. healthunlocked.com/nkf-ckd/...

And "means nothing of significance" is very different than "may not mean a thing.". One has more nuance to it; the other is a clickbait.

Skeptix profile image
Skeptix in reply to Michael__S

"

And "means nothing of significance" is very different than "may not mean a thing.". One has more nuance to it; the other is a clickbait.

"

We'll have to agree to differ on this one. To me there is no significant difference between "meaning nothing of significance" and "not meaning a thing".

And whatever any difference, certainly not enough to sustain a charge of clickbait.

But listen, I ain't here to argue. I've changed the title of the thread to reflect your observations. Cheers...

TR6872 profile image
TR6872

I'm new to the forum but have been following this thread with interest. (I have CKD stage 3).

Here's a take which is slightly different from what I've read here. I don't think those of us who believe that diet and exercise are helpful are arguing that these things repair damaged kidney cells. We are hopeful that they may allow the remaining healthy cells to work more efficiently (and thereby removing more toxins from our blood) and allow us to feel healthier.

And hopefully the healthy cells will deteriorate more slowly as a result of putting less stress on them, maybe slowly enough to allow us to die of something else, like old age! When I changed my diet and exercise regiment, my eGFR increased from 27 to 43 in seven months. Maybe that was just a cosmetic "massaging" of the creatinine numbers caused by cutting out highly processed foods and the other changes I made, but maybe I am extending the healthy life of my functioning nephrons, at least I hope so.

Skeptix profile image
Skeptix in reply to TR6872

You appear to have the right end of the stick (although, as I understand it, it's not so much processed food that elevates your creatinine, it's cooked meat. So a Michelin starred piece of steak is going to inflict as much as a Double Whopper :))

Yes, I understood its about optimising and preserving but there is this focus on eGFR as some kind of motherlode. That's the way I viewed it and many others appear to.

Question: your eGFR went up. Which presumably means your creatinine went down. Did you cut out / reduce meat.

Or did you alter your exercise regime to produce less creatinine?

(all that said, it makes sense that merely halting kidney injurous activity could result in an actual performance bounce back - even if limited. Say inflamed nephrons: they won't operate as efficiently as uninflamed ones, so if you act to remove inflammation, it stands to reason that you'll get an actual performance boost.)

TR6872 profile image
TR6872 in reply to Skeptix

I think its true that many CKD patients obsess too much on small variations of GFR which are probably meaningless - its about long term trends. My eGFR has been bouncing around between 40 and 46 for the last two years, and I'm not that concerned if it goes up or down a few points between labs - I'm happy that it's relatively stable.

When I got serious about my diet and lifestyle in 2019 (when my eGFR was 27), I was lucky in many ways. I was not overweight, did not smoke or drink, was not diabetic. I cut out the highly processed foods, red meat, most dairy, dark colas, fast food (almost all restaurant food, actually - special events only now). I will still bake a small piece of fish or chicken. My potassium numbers are normal, so that's not a big concern, but I have a 20 year history of high blood pressure, so sodium is watched carefully. I'm eating things I'd never heard of before - quinoa and hummus, for example. I added some moderate exercise, walking for 45 minutes or so 4 or 5 times a week. (So I actually increased my physical activity.) That's the gist of it.

Skeptix profile image
Skeptix in reply to TR6872

That was me, bouncing along in the mid 40's until I bounced down to mid 30's all of a sudden and then bounced down to 30. Attention grabbing let's say.

How anally retentive are you about tracking things? You sound like your low meat consumption. You got protein targets you track or just play it by feel?

You sound kinda where I'd like to be: just doing normal stuff with a grooved diet, allowing myself the odd step over and getting on with life.

At the moment I'm in pointman-in-Vietnam mode: walking around wide eyed waiting for the next thing to hop out of the bushes. I ain't panicked or stressed about it: we all gotta die, but am alert and focused. Be good to get back to not thinking about it too much..

TR6872 profile image
TR6872 in reply to Skeptix

I'm not obsessive about tracking numbers, except possibly sodium (less than 2000 mg. with a goal of 1600 mg. daily). As far as protein goes, my general goal is based on the .6 gr. per kilogram of body weight guideline. I weigh 180 lbs., which is 82 kg., so a daily limit of about 50 grams. But I play it by feel mostly. If you avoid the really bad stuff, and eat a lot of the good stuff (the right fruits and vegetables) you can play around a bit with the middle stuff and have a treat now and then.

I haven't mentioned that I'm 70 years old, so if I can squeeze a few more years out my kidneys, I won't feel cheated out of life. There are a couple of little guys I'd like to see grow up a bit, so I'm trying to hang on for a while!

Skeptix profile image
Skeptix in reply to TR6872

Yeah, age is really core. I'm 57 but started late on family so really need to be around for a decent few years to come. And so I've to perhaps dig deeper and longer into this whole gig than I might were I in your position.

You're doing the 0.6g/kg gig. You heard of the 0.3g/kg gig + supplements to make up for the lack of protein? It's kind of doable (I'm kind of doing it) and apparently it produces an improvement on the 0.6g/kg gig. Means no meat (or at least, not in a structural daily way) but it's an option.

TR6872 profile image
TR6872 in reply to Skeptix

Yes, I've heard of the very low protein with keto analogues approach, and I know there's some controversy surrounding it. I've also heard that the supplements can be quite expensive - I'm on a limited budget. Plus I would have a difficult time going full vegetarian or vegan - I enjoy my small amount of tuna or chicken salad for lunch!

My BUN is a bit high, but not terrible, so I watch my protein but I'm not panicked about it.

Skeptix profile image
Skeptix in reply to TR6872

Fair enough. I came across a bloke called Lee Hull advocating the very low + ketoacid diet. He's something of a National Socialist about hitting every factor in kidney disease as hard as you can possibly hit it (he's my age).

But the reality of doing so is tough. No doubt about it.

I take the same approach as you: go as far as I can (with his thesis - indeed, I'm searching for other factors - he doesn't mention hydration or gut health, for example) but don't try to dot every i and cross every t.

He'd have me on 25gr dietary protein a day (the rest supplements to hit the 8gr/kg budget). I can hit 30 with relative ease or thereabouts but getting to 25 would be really painful and I'd spend my day watching everything I eat.

I don't mind not having meat, but like you, there are places I just ain't prepared to go .. yet.

WinJ3 profile image
WinJ3

I would suggest for everyone with CKD go to Kidney⛑ School:kidneyschool.org/

RoxanneKidney profile image
RoxanneKidney

Just get a Cystatin C test that will tell you for sure.

RoxanneKidney profile image
RoxanneKidney

I like the fact that you do research and think about things. With that said, even Mayo clinic has there own GFR calculation formula so I've been beginning to thing they are all really bullshit. I probably have come across five now and I had a 10 pt spread so I'm believing the highest one. But in all seriousness, I'm using my Cystatin C number and my creatinine clearance number because I am a little stocky and I do gain and lose weight depending on my excersize and restrictions.

Blackknight1989 profile image
Blackknight1989

UACR measures kidney damage and eGFR is a measure of remaining kidney function according to NIDDK.gov. Link:

niddk.nih.gov/health-inform...

Further information:

niddk.nih.gov/-/media/Files...

Finally, the limitations on eGFR:

Limitations of eGFR

• eGFR provides an estimate of kidney function.

• Current estimating equations have only an 80 to 90% chance

of being within +/-30% of the measured GFR.

• This uncertainty increases significantly for eGFRs above 60.

Wow “an80.90% chance of being within +or- 30% of GFR!

niddk.nih.gov/-/media/Files...

Page 6

Limitations on UACR:

Limitations of UACR

• Urine albumin measurement is not standardized. Common assays have shown significant imprecision, varying by 40% across albumin concentrations.

• Daily variation in albumin excretion within individuals may confound interpretation and risk assessment.

• Albuminuria levels are affected by glycemia, blood pressure, and type of anti-hypertensive medication.

UACR is not yet standardized and as such can have “significant imprecisions, varying by 40%.”

Link

niddk.nih.gov/-/media/Files...

Page 8

The .pdf linked for the eGFR and UACR limitations is a good read if you have time.

Skeptix profile image
Skeptix in reply to Blackknight1989

That is a dead useful read alright - giving something of a one stop shop for overviewing CKD management through a GP's eyes.

Within confines - they don't say anything about keto acids for instance.

-

That range in reliability with uacr / egfr is shocking when it comes to precise guidance. Like steering a car equipped with a steering wheel made of jelly!

Hard then to get an accurate steer if you are interested in micro managing your disease - although the global direction over time is likely indicative of what way things are moving.

Blackknight1989 profile image
Blackknight1989

Skeptix,

It is somewhat depressing and flabbergasting that the 2 labs used to definitively diagnose, according to niddk.gov, CKD have such tremendous variance. Goes to your OP. If eGFR is going to vary 80-90% of within 30% of GFR does an improvement of the number really signify anything. As I have stated before, in December 2019 my eGFR was 13. July31,2021 after a positive COVID diagnosis it was 24. Creatinine improved from 3.7 to 2.4 all due to controlling my BP again. I would think that with BP down to 115/65 that helped ease the constant strain on whatever healthy kidney cells I have left but do I celebrate the numbers improvement. Me personally I don’t. Maybe because over the 25 years I have lived in stage 4 my numbers have fluctuated mightily. When I had my hips replaced, after the surgery creatinine was over 5 and eGFR down around 10. When I was prescribed Warfin post knee replacement I had to be hospitalized due to the affect that med had on my kidneys. Creatinine over 7 and eGFR not worth measuring. However, there were reasonable explanations as to why my numbers jumped like they did. Did I lose some of my healthy kidney function…I don’t know. I would think that any time your numbers get that high additional damage is done. However, no amount of anything we do can take a kidney cell that is damaged and repair it or regenerate that cell. If my GFR is somewhere in the high teens or low 20s then, to me, that means my kidneys only work at a 20% clip compared to normal healthy kidneys. I know it doesn’t work this way but if you think of a whole healthy kidney (or kidneys) as having 100 cells only 20% of my kidneys are healthy and 80% of the remaining kidney is damaged and not working. In fact, my kidneys show significant atrophy being much smaller than they should be if healthy.

Therefore, I use creatinine and eGFR only as indicators and not something I use to measure progress. Over the 25 years of stage 4 CKD my creatinine runs normally 2-3 and eGFR 15-24 if you throw out post surgery numbers and post wicked blood thinner that tried to kill me numbers. As long as creatinine doesn’t jump to 4 or eGFR drop to 10 I don’t get too concerned with a drop or improvement. They show a trend of staying in stage 4 and not progressing to stage 5 and dialysis. Keep doing what I am doing to maintain and don’t worry about improvement only not damaging any healthy kidney function I have left. That is what is important to me. I don’t believe anything I do will make my kidneys function at 40% only that everything I do needs to be focused on keeping the 20% of healthy function at 20%.

Diet is an important part of accomplishing that and all indications from both Lee Hull and now the NKF show that a meatless, low protein (supplemented if needed) diet is what CKD patients in stage 3a and lower should follow. If that raises your eGFR that’s awesome but I don’t believe that is an indication of underlying kidney cells regenerating and suddenly you have turned an additional 10% of your damaged kidney cells in healthy kidney cells. Rather, you have distressed the kidneys and allowed what you do have working work better, easier. Further, it doesn’t mean you should give up because kidney cells don’t regenerate. To the contrary you should be more focused on continuing the behaviors that raised eGFR because you are preserving the healthy kidney cells you have left. Isn’t that more important anyway, to do all you can to keep the healthy kidney function you have instead of hanging on the numbers which don’t indicate a true improvement of the number of healthy kidney cells and kidney function. For folks like you who weren’t told of their CKD until well into the disease and at a relatively young age I believe that preserving healthy kidney function, staying in stage 3a, 3b or stage 4, is what your goal should be. If you raise eGFR than that will prolong the staying in stage goal. That is what the numbers should indicate that you have maintained you healthy function another 3,6 or 12 months depending on how often you are tested.

I should note I am not a doctor and if you read closely I clearly state that this is what I believe and how I used the numbers in question to evaluate my own CKD. I am not recommending that this is the standard or even the correct way to look at these tests. I am saying that for me (and my nephrologist who is awesome) this is what works and helps me with both keeping perspective on my CKD and keeping perspective on the eGFR and UACR being so frustratingly non specific.

I’ll close with a note from the NKF’s news release about the new eGFR calculations I read in detail today. The third point was the fact that they “standardized” the eGFR calculation reducing the number of ways used to calculate eGFR from 26 down to 5. Did anybody else catch that tidbit? Still 5 ways to calculate eGFR? Sure better than 26 but why not 1 way? I’m sure there is a reason but I am not sure I would fully comprehend…lol!

Skeptix profile image
Skeptix in reply to Blackknight1989

I wonder what produces the variation.

Are we right to assume that the "80-90% and within 30% " refers to eGFR vs actual GFR? IOW, when researchers check a person's eGFR vs their actual GFR then this is how 'off' the eGFR is being found to be?

If so then either:

- the test itself has fluctuation. IOW, Split the same blood sample into a number of specimens and the creatinine measurement will vary wildly (thus eGFR varies)

OR

- the test is badly designed. A person's creatinine can be up because they attended meat fest BBQ and so that skews their eGFR downwards vs actual GFR which would be better.

OR

- a combination of the above.

Do we know which it is?

I would say that it's bad or inadequate design: things other than kidney performance affect serum creatinine. And eGFR tracks those other things.

But if you know your circumstances then perhaps the creatinine no. is useful. No untoward dietary changes, no unusual meds or sicknesses, no lifting heavy weights .... perhaps then creatinine is reflective of kidney disease progression or regression?

I say regression ... because I don't know can the disease regress or retreat? The standard paradigm is that CKD is a one way trip. Slow boat or Hell for Leather but one way. But we've found the standard paradigm lacking (until very recently) in the area of treatment at stage 2,3,4. No/little action has become aggressive dietary action.

Knowing the bodies ability to heal and regenerate I'd hold fire on declaring. But whatever about that potential, certainly just do the best I can for them by way.of preservatiin.

It's obvious that we should consider it a marriage between self and kidneys. Make vows and no matter what the temptation, avoid sleeping with another :). If I'm faithful to them, they will hopefully be faithful to me

Well summit along them lines anyway.

Blackknight1989 profile image
Blackknight1989

Love the marriage analogy! Good point on the 80-90% within 30%. No explanation of the “math” behind that assertion. Liver cells can regenerate, mine have almost totally. Transplants now done with live liver donation because of that fact. Kidney cells cannot as far as I know. So what does getting better or the body healing itself mean if total good kidney cells do not increase? Just my thoughts.

citruskayaker profile image
citruskayaker

My understanding (based on my nepholgist) is that red meat protein is very hard on kidney function and no matter what your eGFR is you should give them up to reduce the rate of decline of kidney function.

Skeptix profile image
Skeptix in reply to citruskayaker

"trim the red meat portion" isn't unusual advice to be given by a nephrologist. But its not necessarily the best advice.

The very latest recommendations from the NKF (2020, an update on the 2012 (a.k.a. ancient) guidelines) advocate low and very low protein diets. That necessarily excludes meat or any hi protein plant food.

Your nephrologist could be citing old thinking. Not false but not up to date either.

citruskayaker profile image
citruskayaker

Thanks for responding. It would be nice to see some clinical data about which protein sources are less harmful for CKD. Are you aware of any technical publications that address this issue?

Skeptix profile image
Skeptix in reply to citruskayaker

To be honest, no. Once I woke up to CKD and what I was sliding towards I took what I felt was the necessary course of action and dumped meat altogether. The science was clear: low or better still very low protein with supplement as a way to (possibly) apply the brakes to this disease

Since that meant no meat, there was no need to look up what meat was best. Besides I work in the meat processing industry and know something of its inner workings so I don't exactly regret the decision from this secondary angle.

I had about a week of mourning and that was about it. Not as bad a I thought, since I don't mind cooking and there's decent plant based food out there (although I did cheat and use real full fat milk for bechemel on a lasagne - the fake milk really didn't cut it!)

citruskayaker profile image
citruskayaker in reply to Skeptix

Going meatless was a smart move. I have been trying to fool myself into believing there is a half-step to take in this direction, but delaying this choice may shorten my life.

Skeptix profile image
Skeptix in reply to citruskayaker

Listen, I ain't an angel and I ignored CKD for 7 years not wanting to alter things.

Some wouldn't touch meat or animal. Me, I'd have the odd omelette and if I was out for an occasional night out and veggies weren't accommodated particularly well, I'd have a meat or fish dish. But it is occasional rather than structural. I'll read the menu of the intended restaurant so as to a avoid the problem in the first place.

I think at your stage you'd be best "taking the strain" so to speak and just knuckle down. It might be that you can ease up here and there if the numbers improve. But first thing to try is to try to arrest the slide.

There ain't nothing lime numbers improving to put diet in perspective

citruskayaker profile image
citruskayaker in reply to Skeptix

So, I have begun research and will "knuckle down", but a consult with a renal dietician is my top priority. Supplements caused my CKD in the first place so I'm afraid to chart my own course, except for weight loss, low salt and working my way towards a vegan diet.

Skeptix profile image
Skeptix in reply to citruskayaker

As you read you'll grow into it. There isn't a way to avoid being own advocate when you think of it logically. Like, stories about here of doctors paying zero attention to a persons declining kidney function. Or stories of neprologists and dieticians operating according to old paradigms.

It follows that the only way for you to know you have a good nephr or dietician is to be abreast of the issue to tell you're at the right address. Which naturally puts you in the driving seat!

Most dieticians are active in the dialysis sector. They won't typically have any experience of implementing the latest NKF guidelines. There are some but check that part out before plumping for one.

KidneyRD.com are US based renal dieticians operating according to the latest science. It is interesting that they note one of the reasons for embarking upon this newest of paths was being inspired into it upon reading Lee Hull.

An ex-financial services guy leading the medics!

citruskayaker profile image
citruskayaker in reply to Skeptix

Thank you! That is excellent guidance and rings true. I'll try to update you as my renal life evolves. 🙂

Skeptix profile image
Skeptix in reply to citruskayaker

Have you read anything on Lee Hull / Stopping Kidney Disease. Leaving aside the details of the scientifically well-supported advice (which is the same as the latest NKF guidelines, but unpacked and unabridged), that book gets you onto a war footing. It gets you sensitive and aware of your (poor)kidneys. You get to wanting to protect them and nourish and help them. Help yourself.

Jesus said "the truth shall set you free". What is often not appreciated about that is that it is not your effort to apprehend the truth which does the work, rather it is the truthiness of the truth which brings about the change. It does the work on you by your exposure to it.

Expose yourself to that book. That exposure will set you free from the mourning for meat. You have far more interesting .. er .. fish to fry!

citruskayaker profile image
citruskayaker in reply to Skeptix

Thanks, I intend to read it as well as others in the series.

medway-lady profile image
medway-lady

CKD is not a description of a progressive disease. It is the description Cronic Kidney Disease which simply means long term not Acute which means sudden. Please, this could be very misleading.

Skeptix profile image
Skeptix in reply to medway-lady

"Chronic kidney disease, sometimes called CKD, is an umbrella term for several conditions that affect the kidneys, but it generally means permanent — and usually progressive — damage to the kidneys caused by a variety of conditions".

"Although CKD is generally progressive and irreversible, there are steps providers and patients can take to slow progression, enabling patients to live longer without complications or the need for renal replacement therapy."

"Chronic kidney disease (CKD) is a progressive loss in kidney function over a period of months or years"

That's the way it's been explained to me - a sure fire decline (whether slowly or quickly) Not to that it progresses in every single case but sufficiently so to label it thus?

medway-lady profile image
medway-lady in reply to Skeptix

No, you are making a sweeping and misleading generalisation. It is not wether its permanent but wether its long term, that may appear to be the same thing but you can only diagnose that from the perspective of time looking back so talk to your Nephrologist. I have no condition that affects my kidneys but an injury so you really should not apply Dr Google or from whom, or where you've got this information from to inform or really misinform people who may get worried. Or perhaps even to promote a diet book that most likely is just not effective. People don't need labels and should look to their professional medical teams when looking for informed advice.

Skeptix profile image
Skeptix in reply to medway-lady

I'm going by what I read and, notwithstanding our shared agreement as to what 'chronic' means, CKD is described as progressive.

If you have been diagnosed with an AKI (which you appear to say you have been) then that is one thing.

CKD is another thing, a different diagnosis: usually and typically described in the literature as surely progressive.

That is by no means a generalisation as a quick Google (and indeed a more comprehensive Google) shows.

You might slow CKD, if that is your diagnosis, you might even halt it with intervention. You might find some small minority for whom the disease doesn't progress when left to own devices (that's considered to be remission).

But the disease is considered and described as a progressive one. That's the drumbeat in the literature.

As to the low or very low protein diets? Those are not only contained in a book but are central to the NKF 2020 guidelines (which also describe CKD as a progressive disease) and so represent a valuable and scientifically well-supported route for treatment.

Efficacy of such diets has been demonstrated, sufficient to attract a 1A guideline rating from the NKF (a.k.a. it's a no brainer, strongly consider going on these diets")

medway-lady profile image
medway-lady

Again a sweeping generalisation. I have a Nephrologist and spent a good while in hospital and am talking from experience not like you from some misguided Dr Google information or even in your efforts to promote a book. Chronic CKD will still be a diagnosis even with a person whose had a transplant and whose GFR may rise. I'm not responding again as I don't think you really understand what your talking about whilst my Nephrologist does. I'd urge people to talk to the professionals not just rely on the promoting of a book.

PS If in doubt read the NHS webpage about CKD. It should inform you not Dr Google.

Skeptix profile image
Skeptix in reply to medway-lady

It was my nephrologist who first told me that CKD was a progressive disease.

The snippets from Dr. Google were from authoritative bodies well fit to comment on the matter. Would you like me to link the references so you can see what kidney agencies say?

Or should I base my view on what you say?

citruskayaker profile image
citruskayaker in reply to Skeptix

Do not waste your time on this. Semantics are not helpful and I support your view.

Skeptix profile image
Skeptix in reply to medway-lady

The NHS?? Since when is the NHS an authority on CKD?

medway-lady profile image
medway-lady

You don't know about the National Health Service ???? the NHS in the UK employs the Nephrologists, Renal Dieticians etc etc etc and supplies the dialysis to people who need it. It treats people with all forms of kidney injuries or diseases, as well as all the other conditions, diseases and things which affect our health and are far to many to list from childbirth to the grave. And it carries out research and ensures that no one who needs help or treatment at the point of need is turned away. It is a source of reliable and informed advice. I'd rather listen or read information from a qualified doctor whose trained for many years than Dr Google and use snippets that you clearly are taking out of context to suit as I said somewhat dubious means.

Skeptix profile image
Skeptix in reply to medway-lady

I know about the NHS alright. I asked what made them, a generalised national health authority an authority on kidney disease?

Compared an authority like the NKF??

"Chronic kidney disease (CKD) is a condition characterized by a gradual loss of kidney function over time.

The earlier kidney disease is detected, the better the chance of slowing or stopping its progression"

kidney.org/atoz/content/abo...

(I can't help that this info was navigated to via Dr. Google)

The NKF heads up an international panel of top kidney doctors and researchers who assemble and analyse the available information (15.000 papers for their latest guidelines, iirc) and formulate the internationally respected KDOQI guidelines.

If they say CKD is progressive, I'd be inclined to believe them over your nephrologist.

Indeed, if Lee Hull happens to come to the conclusion of low and supplemented very low protein plant diets a few years before even the NKF did, then I'd give him the benefit of a hearing over your nephrologist. I gave him a hearing over my own professor nephrologist afterall, who, whilst agreeing with the NKF that CKD is progressive, wasn't yet au fait with their KDOQI 2020 guidelines.

Too many folk come on here with stories of declining eGFRs and nephrologists doing nothing to attempt to halt the decline. Too many for me to take much notice of what your nephrologist has to say. They working to the latest science? How would you know?

medway-lady profile image
medway-lady

I repeat and this is from Kidney Research UK "The term “chronic kidney disease” (CKD) is used world-wide to mean any form of kidney disease that goes on for more than a few months. The word “chronic” doesn’t necessarily mean “serious” and “disease” includes any abnormality of kidney structure or function, whether or not it is likely to cause a person to feel unwell or to develop complications." Which is exactly as I advised you. It is not always progressive and the advice you were given relates to you any the reason you may have kidney disease. Not to anyone else whose circumstances may be very different. So do stop making assumptions. If someone wants to follow a diet its up to them but do remember that some diets can be harmful and we need B12 for example which is derived from meat. All things in moderation in my view is sensible and of course diabetics need to pay special attention to diet.

medway-lady profile image
medway-lady

Read this document particularly 1.3.1 which staes that CKD for most people is not progressive, you may find it informative. Its from Aug 21 so up to date.Chronic kidney disease: assessment and managementNICE guideline [NG203] Published: 25 August 2021

Skeptix profile image
Skeptix in reply to medway-lady

I didn't read the document carefully because it was a long document. But I did read 1.3.1 carefully and what it says is:

"If an adult, child or young person has CKD, or is at risk of it, agree the frequency of monitoring (eGFRcreatinine and ACR) with them (and their family members or carers, as appropriate), bearing in mind that CKD is not progressive in many people. [2021]"

This differs substantially from your somewhat less than careful reading:

"which states that CKD for most people is not progressive"

Many is not most. Many people were killed in WWII but it was a relatively tiny fraction of the total population. Most people weren't killed in WWII

Remember this?

"Chronic kidney disease, sometimes called CKD, is an umbrella term for several conditions that affect the kidneys, but it generally means permanent — and usually progressive — damage to the kidneys caused by a variety of conditions".

"Although CKD is generally progressive and irreversible, there are steps providers and patients can take to slow progression, enabling patients to live longer without complications or the need for renal replacement therapy."

"Chronic kidney disease (CKD) is a progressive loss in kidney function over a period of months or years"

Now combine things. CKD is a widespread disease, which means lots and lots of people are affected by it. If it is generally and usually progressive (such that it can be generally and usually described as a progressive disease) you can still have many for whom it will not progress. Just as you have many people killed in the Iraq war yet it's a relative trifle compared to the total world population.

-

I would note the relatively ancient advice on dietary intervention given in this same NICE guideline. This is the kind of information you'd obtain when attending your typical nephrologist.

The NKF guidelines from 2020 (which assess more recent research activity (up to 2017) into low and very low protein diets supplemented with ketoacidanalogues) differs markedly from this comparatively old school advice.

Lifestyle advice

1.4.6Encourage adults with CKD to take exercise, achieve a healthy weight and stop smoking. [2008]

Dietary interventions

1.4.7Offer dietary advice about potassium, phosphate, calorie and salt intake appropriate to the severity of CKD. [2008, amended 2014]

1.4.8If dietary intervention is agreed, provide it alongside education, detailed dietary assessment and supervision to ensure malnutrition is prevented. [2008]

Low-protein diets

1.4.9Do not offer low-protein diets (dietary protein intake less than 0.6 to 0.8 g/kg/day) to adults with CKD. [2014]

Doctors differ and so too, it appears, do various authorities. Me? I'll stick to the most recent scientific research issued by the worlds foremost authority on the matter. Advice from 2008, which will be based on research years before that, amended or otherwise, just doesn't cut it.

medway-lady profile image
medway-lady in reply to Skeptix

I have no idea what you're now on about, so don't waste your time.( Sorry I pushed return in error). You are clearly unable to grasp that the "most" people is referring to the group of the population which has CKD not the general population which doesn't, or may or may not have CKD. I think you're bewildered.

Skeptix profile image
Skeptix in reply to medway-lady

The word "most" doesn't appear in the section of NICE you suggested I read carefully. The word used was "many".

I think you're not so much bewildered as you are not reading what's on the page carefully.

When you do, my post ought to make more sense to you.

Over & Out

medway-lady profile image
medway-lady in reply to Skeptix

LOL no this is fun ! Do you know what a synonym is ?

Blackknight1989 profile image
Blackknight1989 in reply to medway-lady

OMG, not helpful at all Medway-lady. CKD is UNDERSTOOD to mean (by those of us who actually suffer from CKD) exactly the lifetime progressive deterioration of the kidney nephrons eventually leading to the inevitable need if one lives long enough for dialysis and transplant. That is until researchers get off their collective asses and come up with a different and better alternative.

To argue you point is dangerous and misleading to those who are new or learning. Please in the future have some consideration for others. It isn’t ALWAYS about be correct! I wish you the best.

medway-lady profile image
medway-lady in reply to Blackknight1989

Your lucky I'm on here today as have a broken leg. Your description is NOT correct CKD is an umbrella term for Chronic Kidney Disease and covers many different conditions. Chronic means long lasting as Acute means sudden, that is medically factually correct. Look it up and I have CKD because over 6 years my AKI become CKD ie it won't get better ever as my kidneys are damaged which was sudden in hours/days and due to a medication. I have a percentage dead kidney and the rest doesn't work but over time function has improved from GFR 8 to GFR 30. I've had a lot of tests etc and biopsy etc scans etc, gene research etc and it's going to court so please don't make assumptions about anything you clearly have little knowledge of. Although of course I'm in the UK and if your in the USA things may be termed differently. But thats the NHS. Don't bother to reply as I'm not interested in your misleading posts.

Blackknight1989 profile image
Blackknight1989

Did you not read my entire post. It is the IMPLIED meaning important to CKD patients not the”strict” definition. For you to get yourself all out of sorts about this “pet-peeve” of your is a disservice to new members trying to learn to cope with a devastation and surprising diagnosis. Please try to understand that. It is about others after all and not just you or me. I agree you are 100% correct in you assertion but 100% incorrect to press this issue. It is not conducive to helping others which this entire forum is about.

Now, I have since read some of your other posts and I can relate. I was diagnosed in ‘96 with stage 4 CKD and had an AKI 4 days later. I spent 4 months on a vent and 6 in the hospital. So while again you are technically correct you do not have CKD as the technical definition of that medical condition implies. However, as a fellow AKI sufferer the best advice I can give is you better treat it like CKD because the 100s of fellow patients I have spent time with just like us have shown after such a devastation to organs like the kidneys it will act very much like CKD. That is why my labs are deteriorating now some 26 years later because you only have a set number of nephrons and once those are destroyed you cannot get them back…they are gone forever along with proper kidney function. As always this is my well informed and backed by scientific studies opinion. I truly wish you the best and hope you’ll offer aid not contention to the forum in future. I will not burden you with any more post regards this subject. Much like religion, politics, or race it seem that an amicable discussion is impossible and wouldn’t matter anyway. It was not my intent to be mean, hurt feelings, upset, or piss you or anyone off. Only to try to reason with the compassionate side of your being in hopes of bringing an understanding that while you are correct in your assertion it isn’t the medical definition that’s important to CKD patient which you yourself stated you were not one. If I did I apologize and I wish you the best!

Adams_ profile image
Adams_

Back to 2016 my eGFR was 121.2umol then it went down to 111.4umol in 2020.I might say that from all this period of time (from 2016 to 2020 ) i didn't follow any kind of veg diet-based.To make it worst, i must admit i did all wrong to care for my kidneys ( from 2016 to 2020 )which means junk food, salt, sugar,alcool, all in excess ( i just lowered 90% my alcohol consumption beginning of 2017 ).So regarding that ,should that creatine-based eGFR techniques applied to me?In another way i did give credit to your explanation:

Eat less or not meat and your serum creatine will probably fall, consequently, your eGFR would improve.But as you said:

That's say nothing about your actual GFR ( in my opinion too! )

But, i believe if my eGFR fall down a bit, it means, at least, my GFr would work better, then i do preserve longer my kidney's function?.

It could be wrong scientiffically spoken?i don't know!

Somehow the most important is to be actor of our own well being.Some will have a much more scientist approach of the things when others don't.

In fact everyvody is different but let's hope, one day, we will find out the good and complex formula to sort out the equation.But right now it's like to search for the philosopher's stone.

milo_miller profile image
milo_miller

You are completely correct. The most important marker is ACR or proteinuria which measures kidney performance or ckd progress.

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